On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk MLL + Infantile Leukemia. On November 18th 2015 , she took her last breath. This is her story of hope and love in the face of cancer and despair. Phoebe always brought the joy and continues to inspire us to make a difference. It is best read from the beginning. Thank-you for visiting.

Wednesday, November 12, 2014

Home Again

We are home again. This time hopefully for more than two days. We are back at the hospital tomorrow for a repeat EEG, blood work, an IV medicine, and a clinic visit. It will be a long day, but as long as it ends with us at home, we are happy. It is the little things.

Phoebe is okay. She is still climbing mountains and she is traumatized by all that has happened over the past two months - when we ask her how she feels when she is in the hospital, she says "scared". I wish I could make all of this better. Although not herself, she is much happier at home. Since she arrived tonight, we have seen many smiles. As I write this, she is watching her favourite, Peppa Pig, eating her favourite shepherds pie, and gigging often.

We hope for more days at home. We hope for progress and improvement, but we would be soothed by stability. We are all weary and exhausted and most days I feel like I am one problem away from completely losing my mind.

Thankfully, many of Phoebe's issues are resolving or improving. Her liver is beginning to improve,  her kidney function is stable, her lungs look to be on the mend, and she is now on an anti-seizure medicine that hopefully will not result in the extreme sadness that we saw with the previous medication. She is starting to eat by mouth again, albeit very slowly. Her leukemia is "stable" and only present at a low level although she is still needing regular blood and platelet transfusions. She will have a repeat MRI on Friday to access the swelling that was seen in her brain on the last scan.

We are thankful for the army of people that we have looking after Phoebe. Many doctors at St.Jude are aware of and involved in the care of Phoebe and her many issues. The doctor who is on service this week commented that it takes a village to raise and care for a child, and that Phoebe's village has now grown into a town; a town filled with smart, caring, determined, compassionate and kind people. We are very grateful.

We are also grateful for the army of support that we receive from home. That we are all together in Memphis is the greatest gift, but something that couldn't happen without help. I have been able to work very little since Phoebe was diagnosed and Jon recently put work aside and his business on hold to travel with us to Denver and now Memphis. It is hard and we struggle, but we will never leave Phoebe's side. Keeping our family together through all of this is the most important thing right now.

There are many events being held for Phoebe in Ottawa and many people involved. We are forever grateful for this help. The time that we have together as a family is precious.

A special thank-you to RJW Gem Campbell Stone Masons. Jon was employed by RJW last winter and worked on the restoration of the West Block of Parliament Hill. He was welcomed with open arms into this close knit and warm family and it is an experience that he cherishes. He has maintained many friendships and this group of people has been a wonderful source of support, not only for our family,  but for childhood cancer initiatives as a whole. They supported Jon when he jumped in the Ottawa river last winter and since our arrival in Memphis, they have held weekly 50/50 draws for Phoebe. Thank-you.

A special thank-you to Judy Hum Delaney, the Ottawa Foodie Girlz and Fiazza Fresh Fired Pizza. These amazing ladies are holding a fundraiser for Phoebe at Fiazza Fresh Fired Pizza on November 25th (which is also Mae's birthday) from 11-9pm. 20% of sales from the event will go to help Phoebe and there will also be great prizes up for grabs. Thank-you to everyone involved in this amazing day. For more information, please see this link

A special thank-you to Pauline and fellow musicians. Pauline is organizing a classical music benefit concert for Phoebe this Saturday November 15th at McKay St. United Church. It will be a beautiful day of music. For more information, please see this link   Thank-you to Metro for helping to spread the word.

A special thank-you to Manor Park School, community and friends. They are holding an indoor garage sale and bake sale fundraiser for Phoebe in the school gym on November 22nd. Manor Park, you amaze us and we miss you. For more information, please visit this link

We wish we could thank everyone in person, and I know that I am just scratching the surface when it comes to thanks. We are often speechless when it comes to the kindness and generosity that our town shows Phoebe and we promise to do all that we can to pay this incredible kindness forward. 

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